Tuesday, July 29, 2014

UVA Constraint Therapy ~ Day 1

Today started with a splint appointment at 11am.  At this appointment the therapists heated up the hard plastic and formed and cut the mold for the splint she will be using this month.  In past constraint sessions she wore a cast all day every day for a month, but with this research study, the CHAMP study, Reagan will wear a splint (not a cast) and she will only wear it during her therapy sessions.  She is very excited about not having to wear it all day.  And she convinced the team to let her use the co-band like she used on her cast instead of the velcro straps that traditionally accompany the splint.  Today she picked pink zebra print!

After the splint was made, we went to an outdoor terrace to have lunch as part of her therapy session.  Although very challenging, she was able to make ham and cheese cracker sandwiches, eat goldfish and an apple.  As she ate, we developed some goals that we have for Reagan for this month.  After lunch Reagan went with Ruth and a new therapist, Kate, to go play in the treatment rooms.  Given she is older now, they said I don't need to attend the entire session.  Unfortunately that means treatment pictures will be scarce, but I'll get what I can!

After therapy she played for a little while in the play area in the waiting room.  There is a wonderful woman there, Patti, who will watch siblings while parents take their child to a therapy appointment.  Reagan sat and made a bead necklace, colored a butterfly picture and played with the doll house with two other girls.

After an hour splint appointment and 2.5 hours of therapy it was time to leave the hospital and find something fun for the afternoon.  We decided to go to the Children's Discovery Museum at the Downtown Mall.  Since I bought a membership last August when were were in Charlottesville for constraint therapy it was free.  And as usual, the kids loved it!  Reagan even chose to push Trixie (her new My Little Pony) by herself in her stroller…with ONLY her left hand!  Needless to say you can tell from Reagan's face that she is pretty proud of herself.  Last year it was a struggle just to push the stroller.  Amazing what a year of hard work will help you accomplish!

After the museum we walked through the Downtown Mall and ate outside at Sal's Cafe Italia.  As usual, they have great Italian food and the outdoor atmosphere was superb.  A definite must!  After dinner it was back to the hotel for bath and bed.  The kids are both exhausted and it definitely makes therapy harder when they are tired.  Both were in bed and asleep by 8:30pm.  YAY!  And it's on to Day 2!

Monday, July 28, 2014

UVA Constraint Therapy Take 3

Wow, amazing how many memories come flooding back walking through the doors at the Kluge Children's Research Center (KCRC)!  Two full months last year with so many tears and so much amazing progress.

We made it down to Charlottesville Sunday night and got settled into the hotel.  Unfortunately I forgot to pack pajamas so we had to take a quick trip to the store before we got to the hotel…which meant new PJs for everyone!  Reagan picked My Little Pony and Cole picked Ninja Turtles.  Both were pretty excited about another hotel stay!

Monday we started the day with an 8am pre-treatment evaluation at the old KCRC building where we've had therapy in the past.  The session went very well and it was great to see how well Reagan responded to the therapist knowing how hard this intake has been in the past.  Her assessment included activities such as coloring, stacking blocks, and throwing/kicking balls.  Many of the assessments involved having Reagan do an activity with her right hand followed by doing the same activity with her left hand to see how the two compare.  This is always the hardest part of being her mom.  She handles it very well, but you can see the disappointment when she does really well with right and then really struggles with her left.  The person doing the evaluation was super positive, however, and I think that really helped Reagan not get discouraged.  I think she also sees how much progress she has made and that helps encourage her to keep working hard!

As I've mentioned in previous posts, the hospital/therapy facility where we've had treatment is closing and all appointments/treatments are now in the new UVA Children's Hospital downtown on Main Street.  Although all new appointments moved to the new facility three weeks ago, Reagan had her assessment at the old facility.  She was literally the last patient - after 57 years - to walk through those doors.  It was rather sad to walk away knowing how many patients have been treated there  But as with all good things, change must happen and we must move on.

While Reagan was at the KCRC in her assessment, I ran back to pick up my niece Emily and we took Cole to his therapy appointment at the new UVA Children's Hospital that opened three weeks ago.  I was very lucky to have Emily join me to help with Cole while I'm in sessions with Reagan.  And the juggle between two appointments at the same time in two different buildings today already proved beneficial!!

The new building is absolutely beautiful beautiful!  Cole will see Alan a few times while we are in Charlottesville since we had to cancel all his appointments back home while we are here.  Alan worked very well with Cole and I was very impressed with how quickly he was able to get to know Cole and understand the type of challenges he faces.

Given he only has a few sessions with him, we decided to specifically work on cutting and coloring since Cole has such a hard time holding and pressing any writing utensils and can't use scissors very well.  One other area we talked about was potty training.  I have been rather discouraged that Cole hasn't been receptive to it and Alan made a very good point.  He said Cole is still at about 2-2.5 years developmentally.  So although he is catching up, he should not be compared to other typically developing almost 4 years old (in two months).  So essentially, he is just now getting to the age where he would be ready to tackle potty training.  Although discouraging, it makes a lot of sense and it made me hopeful that perhaps over the next few months we will be able to encourage him to start learning to use the bathroom.

After therapy we decided to head back to the hotel and have a quick lunch before heading to a local watering hole called Meade Park.  It was a really fun pool with water slides, dumping buckets, spraying mushrooms and squirting geysers. Although it was a little chilly today, the kids had a lot of fun and it tired them out!  After heading back to the hotel for showers we decided to head to the mall for dinner at Red Robin.  And of course I got suckered into Build-A-Bear stuffed animals to match their PJs!

Hopefully we are all ready for the fun to start tomorrow!

Sunday, July 27, 2014

A vacation and yet another hospital...

It was GREAT to get away for a family vacation this week to Williamsburg, VA.  We left Sunday for a  nice and relaxing trip to swim at the Kingsmill Resort pool, take a day trip to the beach, visit Busch Gardens and the water park and do a little golfing, tennis and outlet shopping.

We started our vacation Sunday with a trip to see the release of the new Disney Fire Rescue Planes movie.  Unfortunately we were sitting in the first row of the upper section and Cole fell about 3 feet through handicap seating area which resulted in a trip to Emergency Room and four stitches on his chin.  And of course with any good laceration, it should remain DRY to prevent increasing the risk for infection.  So just like that our relaxing vacation went Bischoff style and we adapted and made the most of it….kitty whiskers and all.

On Monday we kept it a low key day with a trip to the Williamsburg Outlets to look at Fall school clothes and visiting Colonial Williamsburg.  Neither of us had been to Williamsburg in several years so it was fun to walk around town and see the colonial setting.  Even though the kids were a little too young to appreciate the historic elements of the town, they enjoyed lunch at a local tavern and loved playing their new harmonicas!  After shopping and site seeing we visited our friends Rick and Lauren Opett for dinner.

Tuesday we went to Busch Gardens and met up with Johnny sister, Vicki, her family and niece Rebecca.  Although it was a very hot and humid day, we had a great time riding rides and playing games.

Wednesday we visited the outlets again and spent the afternoon golfing.  It was the first time we had taken the kids out on a course and they loved it!  Cole was definitely more focused on throwing the ball than truly playing golf, but Reagan really got into the game!  That night she woke up in the middle of the night and said, "Mom, I LOVE golf".  Sounds like we have more golf in our future!!

Thursday we woke up and headed home in the pouring rain.  We were sad the vacation seemed to end so fast, but we needed to head home to get Cole's stitches out on Friday, go to a Billy Joel concert on Saturday and we were headed to UVA constraint therapy on Sunday!  Charlottesville here we come!

Sunday, July 6, 2014

New brace coming soon!

Wow, I haven't posted in over two months!  You'd think I've been on vacation or something.  Well my contracts with Boeing have been very busy and they have kept me traveling.  But life doesn't stop!  Since my last post Reagan has visited the physiologist, Orthotic Solutions, the pediatrician and back to Nascott to check her DMO glove and get fitted for a new brace.

The visit to the physiologist went very well and I actually heard the words, "she may not have to wear the brace long term".  I just about fell out of my chair!  That was the first glimmer of hope in this area and I could have FLOWN home I was so excited.  But one thing I've learned is that you should NEVER count your chickens before they are hatched.  With that said, Dr. Morozova recommended switching from the Cascade 3.5 DAFO (Dynamic Ankle Foot Orthosis) to an SMO (Supra-Malleolar Orthosis).  Unfortunately the orthotist and PT don't agree with the SMO direction and I'm stuck in the middle.  The good news is that we have a team of people who are giving us options.  We met with the orthotist and he cast Reagan for a new brace and will be calling Dr. Morozova to make a final decision on what brace to order.  It should arrive in about 6-8 weeks.  Reagan decided to switch from green with horses to purple with jaguars.  Can't wait to see it!

In addition to therapy and doctor's appointments, we took a trip to the Rehoboth beach with her friend Abby and the Coullahan family.  It was a great trip and a lot of fun.  We played on the beach, took a boat trip to visit Assateague Island, went to a waterpark and Reagan tried cracking crabs for the first time and really liked them!

In addition to some beach time, Reagan went to a Disney Frozen ballet camp with her friend Emma, went to the Leesburg 4th of July Parade and we've made some time to get the ATVs and dirt bike out!